Looking for Action

April 2, 2008

Erin fans,

It's time for another big push on the Conquer Childhood Cancer Act (I put this link in so that you can see exactly what I'm asking you to support). I need you, but it's not the same old, same old. I have a new page for the play book.

Here's the background:

We now have the support of 58 of the 60 Senators we need to get a vote on the Conquer Childhood Cancer Act. You can check here to see if both your state's Senators have signed on. If you are from Texas, don't bother. Senator Hutchison is not there. . .yet. We also have 212 (need 218) Representatives signed on. Doesn't this just FEEL so close?

Anyway, you can use the traditional way of contacting the members directly. Here are a pair of links to the CureSearch website that will help you with some text (and addresses, of course) if you are at a loss for words:

To your Representative
To your Senator

Or you can try to by-pass the Congressional email system which often is automated or staffed by lower level employees who may only record a check on an issue for or against, generate an appropriate form letter response, and send your well-thoughtout missive to the recycle bin rather than alerting your Congress person about your preferences.

For Texans I recommend contacting Senator Kay Bailey Hutchison's legislative aide for health issues. She is Cameron Krier. She is relatively new, but I have some evidence that she "gets it" with regard to this passion of mine. You could also call the Senator's office in DC at 202-224-5922 and ask to speak to her directly.

If you are not from Texas, you could probably find your senator's legislative aide for health on their official web page. If not, call the office and ask who it is. These people are very influential with their Senators because they do the research and make recommendations to their bosses.

Here is why I am hopeful that a new effort on our part might do some good. Senator Hutchison is working with Senator Ted Kennedy to write a big cancer bill and she has recently (3/7) signed on as a co-sponsor of a breast cancer bill, Breast Cancer and Environmental Research Act of 2007, S579 that is very similar to the Conquer Childhood Cancer Act and is in the same position as ours (it has been approved by the HELP Committee). That’s actually the strongest argument to getting her to co-sponsor the Conquer Childhood Cancer Act, if breast cancer, why not children? (The cynic in me says that they are not the same because people with breasts and those who love people with breasts can vote and children can't, but I'm trying to shake that view and give her a chance to do the right thing.)

Let's push this over the edge. Call or write KBH or do what I did, write Cameron Krier. Tell her how important it is. I want to be doing the celebration dance by next week!

I'm leaving you with one more link. I found this when I was trying to building a coherent letter to Ms. Krier. Its a 2006 article about why childhood cancer drug development needs more help. Very interesting (and easy to read).

By the way, here is what I wrote:

Dear Ms. Krier,

I understand that you are the current LA for health issues for Senator Hutchison and as such would be the most informed person on her staff to consider the merits of S. 911—the Conquer Childhood Cancer Act. This bill, proposed jointly last year by Senator Jack Reed and Senator Norm Coleman, passed out of the HELP committee without amendment in December and has garnered the support of 58 Senate co-sponsors. It proposes to amend the Public Health Service Act to advance medical research and treatments into pediatric cancer and authorizes $30 million annually for five years.

There are both rational and emotional reasons to support this bill. Most childhood cancers arise without warning and seemingly without cause. Most can't be predicted or prevented. The cruel hand of fate regularly reaches down and taps families on the shoulder from all walks of life: It has visited the families of bankers and builders, farmers and financial traders, doctors and deliverymen, teachers and lawyers, and so many others. There is so much left to learn and so many lives to save. Unfortunately, pharmaceutical companies don't see much chance for profit with children, and most private fund raising for cancer (think American Cancer Society, Lance Armstrong Foundation, or even the Susan Komen Breast Cancer Foundation) overlooks children almost entirely. This leaves two options for raising research dollars: grieving and stressed parents and our elected officials.

One amazing thing that the Senator may not know about pediatric cancer care in this country is that children and their parents overwhelmingly elect to participate in scientific cancer trials as part or all of their treatment. This contrasts with fewer than 3% of adults with cancer who choose clinical trials as part of their treatment plans. With the vast majority of children with cancer participating in clinical trials, progress towards more effective treatment can be more systematic, leading to more lives saved and fewer negative long-term effects for survivors. Unfortunately, funding for clinical trials has remained steady or even dropped over the last several years, making it more difficult for children to take advantage of the latest scientific breakthroughs. And, as I mentioned before, the smaller market size (and thus, the profit potential) for developing and testing drugs for children does not meet the ROI requirements for most private drug companies.

Some might argue that children can benefit from investments made to treat adult cancers. There are many weaknesses in this argument, including the fact that many children’s cancers are different than adult cancers on a phenotypic and molecular level. Beyond that, they behave differently, suggesting that treatment paths may need to follow different routes. Even for children’s cancers that may be amenable to treatments developed for adult cancers, problems exist making those treatments available for children. Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period. I am aware of only 2 new drugs approved for pediatric oncology only in my lifetime. (If you are interested in learning more about problems with pediatric cancer drug development, I encourage you to following this link to a 2006 article in Molecular Cancer Therapeutics.)

I believe strongly in the ingenuity of our scientists and researchers to solve the health problems facing Americans. I just don’t believe our children show up on the radar often enough. My own child has fought cancer for half her ten-year-old life. There is no cure for her disease, relapsed neuroblastoma. She depends on drugs developed for adults three or four decades ago to keep her tumors at bay. Despite her cruel prognosis, she attacks and relishes life in ways that I wish you could witness. If you saw the way Erin and other cancer children live their lives, you could not possibly let Senator Hutchison stand on the sideline in this battle. Erin wrote her own letter to the Senator a few weeks ago. I think you can sense how important this issue is to us.

Thank you for weighing the merits of this bill. I hope you can recommend that the Senator sign on as a co-sponsor to this bill. Please allow me to address any further questions you may have about the bill or the need it fills.

Sincerely,

Vickie Buenger

(979) 820-1755

http://erinbuenger.blogspot.com